health – Arts Matter

Beyond Voice: A project about silence in depression and bipolar

Posted on May 31, 2024 by George Thomas

By Dr Dan Degerman and Dr Jae Ryeong Sul, Department of Philosophy, School of Arts

Dr Dan Degerman and Dr Jae Ryeong Sul tell us about their project which seeks to highlight the underappreciated and vital role silence plays in the lives of people with mental illness. In doing so, the project will challenge the denigration of silence in mental health. The project recently received an AHRC Research Development and Engagement Fellowship and runs until June 2025.

When we talk about silence in mental illness, it is nearly always as something harmful that we need to ‘break’. Of course, some silences in and around mental illness should be broken. Think of the silence of someone afraid to talk about their distress because of mental health stigma. Or, think of the silence of someone who wants to share their distress but can’t find the words to make others understand.

However, silence is a diverse experience, as most of us will recognise from our own lives. Silence can be painful, imposed, and disempowering. But it can also be pleasant, chosen, and empowering. While it can feel like a barbed cage that keeps us from saying what we want, it can also feel like an oasis of freedom from other people’s demands.

Why should we think that silence in mental illness is any less diverse? Our AHRC-funded Beyond Voice project suggests there’s good reason not to.

Beyond Voice is a philosophical project that sheds light on the role of silence in the lives of people with depression and bipolar. Our research engages deeply with first-person accounts of people with lived experience of these illnesses from different backgrounds. That involves analysing autobiographical accounts and qualitative research, as well as working with a research advisory group consisting of both experts-by-experience and mental health professionals who provide invaluable guidance on our research.

Mapping the rainbow of silence

So far, our research has shown that many first-person accounts defy common assumptions about silence in depression and bipolar. For one, they suggest that silence can be part of what it means to be depressed. The writer Andrew Solomon, for instance, writes that depression ‘is like going deaf, hearing less and less until a terrible silence is all around you until you cannot make any sound of your own to penetrate the quiet’.

“Silence can be painful, imposed, and disempowering. But it can also be pleasant, chosen, and empowering.“

By contrast, in the manic episodes that form part of bipolar, the loss of silence can be a source of suffering and longing, as the writer Bassey Ipke suggests in her account of such an episode: ‘The thoughts have started to flood. They tumble and race so quickly that only focusing on [the cab driver] helps slow their circling. … [M]y mind is never quiet’.

These are just two examples of the rainbow of silence experiences – to borrow a metaphor from our advisory group – that people with depression and bipolar report. The first key objective of our 18-month project is to begin to map out that rainbow.

A better understanding of the variety of silences that occur in depression is not simply a matter of dotting some ‘i’s in an otherwise complete picture of depression and bipolar.

A clearer picture of the rainbow of silence will have important practical implications for people with those illnesses and those who want to help them, including friends and family, healthcare professionals, and policymakers. The second and third objectives of Beyond Voice are to draw out those implications.

The implications of silence for mental health

Some implications have already begun to emerge.

Since silence can be a part of what it is to be depressed or a desperate attempt to keep the worst consequences of mania at bay, we need to recognise the potential harm that the blinkered insistence on ‘breaking the silence’ around mental illness can have.

For example, other people’s well-intentioned appeals to share experiences or unsolicited advice can cause more harm than good to an individual whose depression is so severe that they cannot speak and do not even feel the urge to. In such cases, simply sitting with them in silence – honestly acknowledging the depth of their despair and quietly blunting their isolation – may instead be the crucial first step towards providing the appropriate support.

In other words, we must consider how we can help those who want to speak to do so without pathologising and pressurising those who cannot or have good reasons not to.

Our work will continue over the next year and we’d love to hear from you with your own thoughts on and experiences of silence.

Dr Dan Degerman is a Research Fellow in the Department of Philosophy and is interested in issues at the intersection of mental health, emotions, and politics. His first book Political Agency and the Medicalisation of Negative Emotion has just been published in paperback. Dr Jae Ryeong Sul is a Research Associate in the Department of Philosophy with research interests in phenomenology and philosophy of psychiatry. To find out more about the Beyond Voice project, please contact dan.degerman@bristol.ac.uk.

Is illness important to philosophy? A spotlight on project EPIC

Posted on November 16, 2023November 16, 2023 by George Thomas

By Professor Havi Carel and Assistant Professor Ian James Kidd (University of Nottingham)

To mark World Philosophy Day, Professor Havi Carel and Assistant Professor Ian James Kidd (University of Nottingham) provide an update on their Epistemic Injustice in Health Care (EPIC) project. Havi first introduced us to EPIC back in April and with the project now underway, it’s wonderful to see the progress that has been made.

Serious illness can seem extraordinary in the suffering and pain it inflicts, the losses it causes and its role as a premonition of death. It marks human life as vulnerable, limited, subject to contingency (such as a genetic mutation leading to cancer), and, of course, as finite. Project EPIC, a Wellcome Discovery Award, was launched in September, to study a particular aspect of this vulnerability. It focuses on a set of injustices – called ‘epistemic injustices’ – that can affect ill persons when they are not listened to, ignored, or their needs and wants overlooked. This is an injustice meted out to a person who is already ill and vulnerable, a vulnerability on top of the vulnerability all humans share as flesh and blood creatures whose bodies are susceptible to injury and disease.

Illness is a sign of our mortality and hence a human universal. None of us can avoid it indefinitely and it touches on every human life at some point. Everyone is, was, or will be, ill. Even if, miraculously, one does avoid serious illness, we will experience illness in the lives of those we love and care for. Illness is a fact of our humanity and of our membership in the animal kingdom.

Despite that, within philosophy, the profound significance and impact of illness has so far not received its due place. Language, mind and other aspects of human existence are philosophically well-studied. But illness is not. In most cases, illness is seen as a set of pragmatic and scientific questions – about the definition of disease or allocation of healthcare resources. These are the concerns of the sub-fields of philosophy of medicine and philosophy of science, as well as political philosophy and bioethics. But illness raises philosophical concerns that fall outside the scope of those sub-disciplines.

Consider the existential complexities of serious illness. A serious illness is one of the most profound and life-changing events in one’s life. It changes the ill person’s body and agency. Illness alters our ability to do things – from the mundane (carrying your shopping home) to the most significant (being around for your children). Such temporal changes also shape our sense of possibility, finitude, and our sense of the certainty of death.

“Humans seek knowledge, offer testimony, and work to understand their own and others’ experiences. When our epistemic efforts come to be unfairly obstructed, one suffers an epistemic injustice”

We believe that for all these reasons illness ought to be a central topic in philosophy. Moreover, illness cuts across some of its fundamental areas. Ethics, metaphysics, ontology, and social and political philosophy are all importantly informed by the ‘facts of life’ made salient by illness. What are these ‘facts of life’? That we are mortal, embodied, fragile, vulnerable, temporally finite, and existentially self-concerned. Our existence is conditioned by the changing state of our body.

One aspect of illness takes on particular importance: the vulnerability and dependence on others that arise from one’s body or mind being ‘diseased’. Vulnerability is morally relevant. It can be recognised, attended to, and invites care, compassion and protection. Dependence tells us something crucial about human life. We live and develop with others, who can support or obstruct our development. Our connections to others could be nurturing or oppressive. This whole nexus of dependence, connection, and vulnerability ought to guide our philosophising. Many feminist philosophers, for instance, explore these themes in relation to specific issues like justice, fairness, and social inclusion.

Within this nexus, and within the context of illness, one important area to study is that of the relationships within health care. These caring relationships involve multiple dimensions: scientific and biomedical, existential-personal, professional, and institutional-hierarchical. These relationships are often complex and played out during times of great distress and strain on ill persons and their families. They also take place within healthcare institutions, often characterised by their vastness, structural complexity, stubborn institutional constraints (time! Money!), and often changing institutional goals. It is important to note that individual ill persons can get lost within such structures and can find themselves unfairly treated by healthcare professionals or others (for example, social workers, insurance companies, and hospital clerical staff).

These social realities can give rise to what Miranda Fricker named ‘epistemic injustice’, an injustice relating to someone’s epistemic capacity. Humans seek knowledge, offer testimony, and work to understand their own and others’ experiences. When our epistemic efforts come to be unfairly obstructed, one suffers an epistemic injustice. Varieties of epistemic injustice are consistently reported by persons with somatic and psychiatric illnesses. Patients might, for instance, find their testimonies unfairly deflated due to racist biases and stereotypes. Questions about treatment options can be ignored or dismissed. If a patient reports severe pain, their testimony might fail to receive the uptake and response it merits. Fricker also describes kinds of ‘hermeneutical injustice’, unfair and harmful failures of understanding. One needs the right concepts, terms, and language to explain certain experiences. Fricker offers the example of the concept of ‘sexual harassment’. If the necessary concepts and language are either unavailable or ruled out as ‘unacceptable’, one suffers a hermeneutical injustice.

A main theme of contemporary work in the philosophy of illness is the epistemic injustices reported by persons with chronic illnesses. The new project – EPIC: Epistemic Injustice in Health Care will study these injustices. What are their forms, what causes them, how do they aggravate the sufferings of ill persons and what can be done to redress them? These aims combine many kinds of philosophy; there are moral issues of justice and fairness, social and political questions about the proper organisation of our shared world, and epistemological questions about credibility, testimony, understanding and the obstacles to our individual and collective epistemic life. There are topics in the philosophy of science and medicine, too, as well as phenomenological investigation into the experience of somatic and psychiatric illness.

“It is important to note that individual ill persons can get lost within such structures and can find themselves unfairly treated by healthcare professionals or others (for example, social workers, insurance companies, and hospital clerical staff)”

In addition, project EPIC will, for the first time, offer a systematic empirical study of epistemic injustice within a range of health care settings, from maternity care and vaccination programs to mental health and cancer. It will deploy diverse research methods from a variety of disciplines, including medical history, qualitative health research, legal studies, discourse analysis, and philosophy.

At the background of this project are also existential questions about what it means to live a human life, what it means to understand and connect meaningfully with other human beings. What starts as reflections on the kinds of epistemic injustice reported by ill persons within healthcare institutions and the social world can inform our thinking about the human condition itself—mortal creatures whose life is conditioned by contingency, vulnerability and dependence.

Professor Havi Carel, Department of Philosophy, is Principal Investigator (PI) on project EPIC. Assistant Professor Ian James Kidd, University of Nottingham, is a co-Investigator (co-I). To find out more about the work of project EPIC, please email the project manager Charlotte Withers (cw1658@bristol.ac.uk).

Girls on the Pitch: Making Change Happen for Women’s Football in Brazil

Posted on May 26, 2023June 18, 2024 by George Thomas

By Dr Mark Biram, Teaching Associate in the Department of Hispanic, Portuguese and Latin American Studies, School of Modern Languages

Dr Mark Biram tells us about his project to empower young girls in Brazil through participation in football. Mark is working closely with Brazilian NGO Meninas em Campo (Girls on the Pitch), as well as leading academic on women’s sport in Brazil, Silvana Goellner, to achieve this aim. The project has recently received an AHRC Impact Acceleration Account award, aligns with the University’s efforts to achieve social justice both at home and abroad, and is yet another example of how arts and humanities research can influence change for the better.

Meninas Em Campo, translates as Girls on the Pitch in Portuguese

With help from the AHRC Impact Acceleration Account, in collaboration with a Brazilian NGO Meninas em Campo and leading academic on women’s sport in Brazil, Silvana Goellner, we are designing a project aimed at the empowerment of young girls through participation in football from a young age. Our project will raise awareness of crucial social, economic and logistical barriers which currently discourage or prevent girls from participating in football, providing practitioners with a blueprint to replicate the work of Meninas Em Campo (Girls on the Pitch), a project which uses football as a vehicle for the empowerment of girls and to help them negotiate the difficulties of adolescence.

Meninas Em Campo has proved itself to be a highly successful proactive example of promoting gender equality through both discourse and practice. It is a non-profit organisation located in Butantã, São Paulo which offers a space for 9-17 year old girls to develop as footballers. The project is financed by Colégio Santa Cruz and supported by the University of São Paulo. Meninas Em Campo is the largest grassroots socially motivated girls football project, outside of those of the big clubs.

Why is this research important?

Whilst carrying out ethnographic research with Santos FC Women in 2018 & 2019 I became aware of the lack of formalised spaces for girls to play the game from an early age. At present, all major Brazilian clubs have a women’s team, in order to comply with national and international regulations. However, there is still a lacuna in provision for younger girls. Projects like Meninas em Campo provide a blueprint which can be replicated elsewhere.

What does the research project involve?

The project involves producing and disseminating materials which practitioners can use to attract girls to playing the game in the first instance, and to engage them with the wider issues attached to gender and other inequalities through the lens of sport. The project intends to engage with secondary schools across Brazil showcasing the best practices of Meninas em Campo and providing the schools with a range of materials which they can use to develop their own provision for girls’ football.

What are the next steps for Girls on the Pitch?

After the initial scoping trip in January, we have already applied for a further round of funding with a view to producing a guide for practitioners on how best to optimise opportunities to raise issues of gender inequality, problems faced by girls during adolescence and how best to engage the public and private sector into investing in the women’s game. This guide is led by the findings of Dr. Mark Biram’s PhD thesis Women’s Club Football in Brazil and Colombia: A Critical Analysis of Players, Media and Institutions and by the work of Hispanic, Portuguese & Latin American Studies PhD candidate Júlia Belas Trindade, who has published a series of Guardian articles on the growth of the women’s game.

We wish Mark every success with Girls on the Pitch and look forward to seeing how the research project develops.

Dr Mark Biram is an early career researcher and teaching associate in the Department of Hispanic, Portuguese and Latin American Studies. To find out more about Mark’s research, please email mark.biram@bristol.ac.uk.